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Patient organisations

BELGIUM

WEST-VLAANDEREN-ROESELARE

von Hippel-Lindau België

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CANADA

Ontario-TORONTO

VHL Canada

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CROATIA

CROATIA-SPLIT

Von Hippel-Lindau (VHL) Hrvatska

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FRANCE

AUVERGNE-RHONE-ALPES-TALLOIRES

VHL France - Von Hippel Lindau France

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GERMANY

Bayern-MÜNCHEN

Verein VHL (von Hippel-Lindau) betroffener Familien e.V.

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GREECE

ATTIKI-ATHENS

VHL Family Aliiance Greece

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HUNGARY

Közép-Magyarország-BUDAPEST

VHL Hungary - Magyar VHL (von Hippel-Lindau) Társaság

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ITALY

PIEMONTE-TORINO

Associazione Italiana Famiglie VHL ONLUS

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NETHERLANDS

Zuid-Holland-GOUDA

Belangenvereniging Von Hippel-Lindau

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SPAIN

Cataluńa-SABADELL

AEF-VHL: Alianza Espańola de Familias de Von Hippel Lindau

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SWITZERLAND

Suisse Romande-CHERNEX

AIRG-Suisse Association pour l'Information et la Recherche sur les maladies rénales d'origine Génétique

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TURKEY

TURKEY-ISTANBUL

Von Hippel-Lindau (VHL) - Türkiye

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UNITED KINGDOM

Greater London-WEB-BASED ONLY

VHL (Von Hippel Lindau ) UK/Ireland Charity

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FRANCE

BRETAGNE-RENNES

Association Surrénales

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ITALY

PIEMONTE-COLLEGNO

AIMEN 1 & 2 - Associazione Italiana Neoplasie Endocrine Multiple di tipo 1 e 2 ODV

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FRANCE

AUVERGNE-RHONE-ALPES-LYON

APTED - Association des Patients porteurs de Tumeurs Endocrines Diverses

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GERMANY

Bayern-FÜRTH

Netzwerk Hypophysen- und Nebennierenerkrankungen e.V.

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ERN

GERMANY

Berlin-BERLIN

Deutsche Stiftung für junge Erwachsene mit Krebs

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ERN

ITALY

UMBRIA-MONTEFALCO

A.I.NET - Associazione Italiana Tumori Neuroendocrini

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NETHERLANDS

Gelderland-NIJKERK

Bijniervereniging NVACP

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ERN

SPAIN

Galicia-ORENSE

Asociación Anasbabi Ciliopatías

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SWEDEN

Region Stockholm-LIDINGÖ

Föräldraföreningen Anonymous

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AUSTRALIA

New South Wales-ARTARMON

Variety - the Children's Charity

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AUSTRALIA

New South Wales-BOWRAL

RCA - Rare Cancers Australia

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AUSTRALIA

New South Wales-DARLINGHURST

Genetic Alliance Australia

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AUSTRALIA

New South Wales-GLADESVILLE

AWCH - Association for the Wellbeing of Children in Healthcare

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AUSTRALIA

Victoria-PARKVILLE

GSNV - Genetic Support Network of Victoria

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BELGIUM

ARRONDISSEMENT BRUSSELS-CAPITAL-BRUSSEL

Fondation contre le Cancer / Stichting tegen Kanker

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BELGIUM

ARRONDISSEMENT BRUSSELS-CAPITAL-BRUSSELS

RaDiOrg - Rare Diseases Belgium - BE

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BELGIUM

ARRONDISSEMENT BRUSSELS-CAPITAL-BRUXELLES

SUN CHILD - Prendre un enfant par la main A.S.B.L.

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BELGIUM

NAMUR-WÉPION

Rare Disorders Belgium (RDB) ASBL - BE

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BELGIUM

VLAAMS BRABANT-HALLE

KIKOV-Leuven - Kinderkanker Oudervereniging Leuven vzw

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CANADA

Colombie-Britannique-VANCOUVER

Rare Disease Foundation

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CANADA

Ontario-TORONTO

AboutFace

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CYPRUS

Cyprus-NICOSIA

Cyprus Association for Children with Cancer and Related Diseases "One Dream One Wish"

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CYPRUS

Cyprus-NICOSIA

PA.SY.KA.F - The Cyprus Association of Cancer Patients and Friends

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CYPRUS

Cyprus-NICOSIE

Pancyprian Association For Rare Genetic Diseases « Unique Smiles »

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ESTONIA

Tallinn-TALLINN

Eesti Vähiliit

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FINLAND

Finland-HELSINKI

Sylva ry

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ERN

FRANCE

ILE-DE-FRANCE-L'ISLE-ADAM

Association Source Vive

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FRANCE

ILE-DE-FRANCE-PARIS

La Ligue Contre le Cancer

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FRANCE

ILE-DE-FRANCE-VILLEJUIF

Association ISIS

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FRANCE

NOUVELLE AQUITAINE-BORDEAUX

EwenLife Rare Maladies Rares

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FRANCE

OUTRE-MER-SAINT-PIERRE

Association pour la Sensibilisation aux Maladies Rares, Orphelines et Auto-Immunes ŕ Saint-Pierre-et-Miquelon

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GERMANY

Nordrhein-Westfalen-BONN

Deutsche Kinderkrebsstiftung

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ERN

GREECE

ATTIKI-ATHENS

"95" - Rare Alliance Greece

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GREECE

ATTIKI-ATHENS

Karkinaki Awareness for childhood and adolescent Cancer

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GREECE

ATTIKI-ATHENS

TO MELLON - Association of people with genetic disorders

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IRELAND

County Dublin-DUBLIN

Rare Ireland-Family Support Network

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ITALY

LAZIO-ROMA

ALTI - Associazione ''Io, domani'' per la Lotta contro i Tumori Infantili ODV

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ITALY

LOMBARDIA-VARESE

La Gemma Rara ODV

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ERN

LUXEMBOURG

LUXEMBOURG-BOEVANGE-SUR-ATTERT

Een Haerz fir kriibskrank Kanner / Un coeur pour les enfants atteints de cancer

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MALTA

MALTA-VALLETTA

The National Alliance for Rare Diseases Support - Malta

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POLAND

Kraków-KRAKOW

KOLIBER - Stowarzyszenie na rzecz dzieci z choroba nowotworowa

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POLAND

Lodz-LODZ

Fundacja "Krwinka"

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POLAND

Poznan-ROKIETNICA

GEN - Stowarzyszenie na Rzecz Dzieci z Zaburzeniami Genetycznymi

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ROMANIA

BRASOV-BRASOV

ABC - ASOCIATIA BOLNAVILOR DE CANCER DIN ROMANIA

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ROMANIA

BUCURESTI-BUCURESTI

PAVEL - Association PAVEL (Primind Ajutor Viata Este Luminoasa)

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ROMANIA

SALAJ-ZALAU

Centrul de Informare pentru Boli Genetice Rare - Centre for Information about Rare Genetic Disorders

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SERBIA

Serbia-BELGRADE

ZVONCICA - Childhood cancer parent organisation

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SLOVAKIA

Presovsky kraj-BARDEJOV

ZOGO - Zdruzenie Ojedlinelych Genetickych Ochorenie

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SPAIN

Andalucía-ALMERÍA

FPF: Fundación Poco Frecuente

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SPAIN

Andalucía-COÍN

ADISEN: Asociación Nacional de Addison y Otras Enfermedades Endocrinas

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SPAIN

Castilla - León-TROBAJO DEL CAMINO

ADERLE: Asociación de Enfermedades Raras de León

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SPAIN

Galicia-A CORUŃA

FEGEREC - Federación Gallega de Enfermedades Raras e Crónicas

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SPAIN

Madrid-MADRID

ASION: Asociación Infantil Oncológica de Madrid

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ERN

SPAIN

Madrid-MADRID

INDEPF: Instituto de Investigación y Desarrollo Social de Enfermedades Poco Frecuentes

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SPAIN

Murcia-TOTANA

D'GENES Asociación de Enfermedades Raras y Trastornos Generalizados del Desarrollo de Totana

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SPAIN

Navarra-PAMPLONA

GERNA: Grupo de enfermedades raras de Navarra

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SWEDEN

Region Stockholm-BROTTBY

Willefonden

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SWITZERLAND

Suisse Alémanique-USTER

KMSK - Förderverein für Kinder mit seltenen Krankheiten

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SWITZERLAND

Suisse Italienne-BELLINZONA

MGR - Associazione Malattie Genetiche Rare Svizzera Italiana

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SWITZERLAND

Suisse Romande-MONTHEY

AEMO - Association Enfance et Maladies Orphelines

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SWITZERLAND

Suisse Romande-SION

MaRaVal - maladies rares valais - seltene krankheiten wallis

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UNITED KINGDOM

Antrim and Newtownabbey-BELFAST

URDDAD Foundation - The Ultra Rare Disease, Disorders & Disabilities Foundation

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UNITED KINGDOM

Greater London-LONDON

ARC - Antenatal Results and Choices

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UNITED KINGDOM

Greater London-LONDON

CLIC Sargent (Cancer and Leukaemia in Childhood)

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UNITED KINGDOM

Greater London-LONDON

TCT - Teenage Cancer Trust

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UNITED KINGDOM

Staffordshire-STAFFORD

CCPA - The Childhood Cancer Parents Alliance

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UNITED KINGDOM

Surrey-EPSOM

Gene People

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UNITED KINGDOM

Surrey-OXTED

Unique - The Rare Chromosome Disorder Support Group

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Alliances and umbrella organisations

AUSTRIA

WIEN

WIEN

Pro Rare Austria - Allianz für seltene Erkrankungen

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AUSTRIA

WIEN

WIEN

Lobby4Kids

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BELGIUM

ARRONDISSEMENT BRUSSELS-CAPITAL

BRUSSELS

RaDiOrg - Rare Diseases Belgium

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BELGIUM

NAMUR

WÉPION

Rare Disorders Belgium (RDB) ASBL

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BULGARIA

 South-West region

SOFIA

NAPRD: National Alliance of People with Rare Diseases

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CANADA

Ontario

TORONTO

CORD - Canadian Organization for Rare Disorders

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CROATIA

CROATIA

ZAGREB

Hrvatski savez za rijetke bolesti

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CYPRUS

Cyprus

NICOSIA

Cyprus Alliance for Rare Disorders

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DENMARK

Hovedstaden

TAASTRUP

Rare Disorders Denmark

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FINLAND

Finland

HELSINKI

Harvinaiset-verkosto

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FINLAND

Finland

HELSINKI

HARSO - Rare Diseases Alliance of Finland

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FRANCE

ILE-DE-FRANCE

PARIS

Alliance Maladies Rares

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FRANCE

ILE-DE-FRANCE

PARIS

EURORDIS - Rare Diseases Europe

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ERN
FRANCE

ILE-DE-FRANCE

SAINT-MICHEL-SUR-ORGE

SOLHAND - Solidarité Handicap ''autour des maladies rares''

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GERMANY

Berlin

BERLIN

ACHSE - Allianz Chronischer Seltener Erkrankungen e.V.

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GREECE

ATTIKI

ATHENS

PESPA - Greek Alliance for Rare Disease Network

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HUNGARY

Közép-Magyarország

BUDAPEST

HUFERDIS - RIROSZ - Hungarian Federation of People with Rare and Congenital Diseases

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IRELAND

County Dublin

DUBLIN

RDI-Rare Disease Ireland

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IRELAND

County Dublin

DUBLIN

IPPOSI - The Irish Platform for Patient Organisations, Science and Industry

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ITALY

LAZIO

ROMA

UNIAMO FIMR onlus - Federazione Italiana Malattie Rare

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ERN
ITALY

PIEMONTE

TORINO

Federazione Malattie Rare Infantili

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LATVIA

LATVIA

RIGA

Latvian Alliance for Rare Diseases

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MOROCCO

Casablanca

CASABLANCA

Alliance Maladies Rares Maroc

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NETHERLANDS

Utrecht

SOEST

VSOP - Vereniging Samenwerkende Ouder- en Patiëntenorganisaties

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POLAND

Warszawa

WARSAW

ORPHAN - Krajowe Forum na rzecz terapii chorób rzadkich

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PORTUGAL

SUL

LISBOA

Fedra - Federaçăo de Doenças Raras de Portugal

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PORTUGAL

SUL

LISBOA

RD-Portugal - Uniăo das Associaçőes das Doenças Raras de Portugal,

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ROMANIA

SALAJ

ZALAU

RONARD - Alianta Nationala Pentru Boli Rare Romania Network

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SERBIA

Serbia

BELGRADE

NORBS - Nacionalna organizacija za retke bolesti Srbije

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SLOVAKIA

Bratislavsky kraj

PEZINOK

Slovenska aliancia zriedkavych chorob

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SPAIN

Cataluńa

BARCELONA

FECAMM - Federació Catalana de Malalties Minoritaries

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SPAIN

Madrid

MADRID

FEDER: Federación Espańola de Enfermedades Raras

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SPAIN

Madrid

MADRID

Federación Espańola de Padres de Nińos con Cáncer

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ERN
SWEDEN

Region Stockholm

SUNDBYBERG

Sällsynta diagnoser Network

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SWITZERLAND

Suisse Romande

VUARRENS

ProRaris - Alliance Maladies Rares-Suisse; Allianz Seltener Krankheiten-Schweiz; Alleanza Malattie Rare-Svizzera

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UNITED KINGDOM

Greater London

LONDON

Contact - For families with disabled children

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UNITED KINGDOM

Greater London

LONDON

GA UK : Genetic Alliance UK

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UNITED KINGDOM

Greater London

LONDON

RDUK : Rare Disease UK

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UNITED KINGDOM

Greater London

LONDON

SHCA - Specialised Health Care Alliance

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